Caring for the Caregiver

I wanted to share with you all what Mom and Dad's dear friend, Mary, wrote in a comment on my first blog post.  Everything she wrote is so very true, and I pray that you will all take it to heart.  If you choose to do so, you can reach mom at latexorose@gmail.com or at 770-584-7383.  We are eternally grateful for the countless prayers that have been lifted up, the uplifting cards that have been sent, and the precious friends who have taken food, gift certificates, and more to my parents.  No act of kindness, however small, has gone unnoticed.

From Mary:

 I am a big fan of Robert Bowles and am thankful that he is surrounded by such a loving and supportive family. I could write a glowing tribute to this sweet man; but since this is also an informative forum, I would like to switch to one of Robert's favorite topics: his wife.

More specifically, his main caregiver. Anyone who has ever done the day-to-day care of a loved one who is losing skills can attest to how difficult that task can be and how stressful it can be to one's immune system. Anyone who know Judy also knows that she has had a lot of her active years robbed from her because of an ugly case of lupus. (During which her "gift from God" took care of her.)

Thank God, it is in remission right now. But I am concerned about its rearing its monstrous head if she continues working as hard as she is right now. So, let's all think of ways we can take care of the caregiver. Robert, more than anyone else, would appreciate our doing that.

Let her know you're coming to sit with Robert one afternoon so she can go out and piddle around Wal-Mart. You couples: The husband can sit with Robert and the wife can take Judy out to lunch. Send her a certificate for a massage or a manicure. Ask her permission for you to pack an overnight bag so you can sleep near Robert and listen out for him so she can slip away for a night of uninterrupted (and thereby restorative) sleep. If you run into her downtown, ask about her even before you ask about Robert (Robert would love you for that). Be aware that she is grieving as she sees the love of her life slip further away on those "some days." Encourage her to cry on your shoulder, to talk about her pain, to reminisce about their years together bringing 3 little ones into the world.Pray for her and love her so she can remain physically and emotionally strong enough to take care of our dear Robert.

God's Provision

Throughout this journey, God's provision has been apparent to our family in often miraculous ways.  

One day, I hope I will be in the position to be able to share more details about this provision, but even if I'm not, rest assured that God has multiplied loaves and fishes, moved mountains, and rained down manna from Heaven at the exact moment my family needed it...time and time again.  He has taken my breath away at times from sheer amazement at His provision.  

Today was a wonderful day of provision for my parents.  I thank my Heavenly Father for that provision and know that there will never be a day they will be without His heavenly blessings.

One way God provided for my Dad was in giving him an amazing doctor.  Many of you read our story on facebook several months ago.  My "baby brother" Alex (who is 32) is quite a talented golfer.  Dad had been waiting 6 weeks for Emory to call him and schedule his appointment.  His disability benefits had been stopped until this appointment documented what was wrong with him.  We knew it was something serious (he was sent to Emory with suspicion of Frontotemporal Dementia), and we knew he needed to be seen immediately, but time dragged on.  

Enter my hero, Alex.  

Alex called a golfing buddy who just happens to be the CEO of one of Emory's smaller branches.  His buddy called the CEO of Emory Healthcare, and then Alex's friend assured mom and Alex that he should be getting a call soon.  He got that call within a few hours...and he had an appointment the following week.  What a relief we all felt when we got the appointment scheduled!  

Unfortunately, disappointment set in for me when I learned that he wouldn't be seeing the world renowned specialist he was originally referred to.  

Enter God's provision.

Instead, Dad was placed with a truly gifted and compassionate doctor named William Hu.  Mom and Dad love him more after each visit.  18 months of visits to a variety of specialists had yielded dad no diagnosis he could hang his hat on.  Dr. Hu recognized the combination of cognitive and parkinsonian symptoms immediately and diagnosed Dad with Lewy Body Dementia.  Dr. Hu trained at Mayo Clinic and is highly intelligent.

We were criticized by some well-meaning folks in the beginning about going to Emory...They said, "No!!  He needs to go to Mayo Clinic."  But, traveling to Jacksonville 3-4 times per year for a couple who is dealing with Lupus and LBD is a nearly impossible feat, especially when all of their children are working full-time jobs.  We felt good about Emory.  Dad researched and saw that Emory, UNC, and Mayo are the top three centers for LBD and other dementias, so we already felt confident about going there.  When God put us in Dr. Hu's hands, we knew that His provision was evident yet again.  God intended for Dad to be at Emory Healthcare.  And he intended for him to be under the care of Dr. Hu.  I will never doubt those two facts.

Dad had his third appointment with Dr. Hu today.  Dr. Hu wanted to know which symptom was the most troublesome right now:  the parkinson/physical symptoms, sleep problems, or cognitive symptoms.  Dad has been very cognitively stable these last couple of months and for that we are thankful!!  He has fuzzy days, but overall he is himself.  I know that this will not always be the case, so I am clinging to every great moment and holding on tightly!!  Dad said the physical symptoms were the most troublesome.  He feels pretty terrible 90% of the time.  He hardly gets out of bed, and when he does he feels miserable.  Dr. Hu started him back on a Parkinsons Drug, Sinemet.  He tried this before he was referred to Emory, and he didn't respond too favorably the first time he tried it as far as reducing his tremors or shuffling gait, but it did help his extreme neck stiffness/pain, so it is worth it to go back on it.  He is also switching him from a prescription sleep aid to Melatonin.  I like that Dr. Hu is conservative.  He likes to use natural approaches whenever possible...like the Jobst waist-high stockings which are doing more for his Orthostatic Hypotension than any other thing we had tried.  He also doesn't believe in starting more than one medicine at a time.  Since Dad's cognitive symptoms are stable right now, he will wait until the next appointment to begin the Alzheimers drug Aricept.  

Dad left there in good spirits.  It was a good day...full of God's provision.  Days like this make my heart smile.

~Ashley

Alex's Perspective

        As I sit here thinking about the amazing life my dad has blessed our family with over my 32 years, I cannot help but think of how the days are now.  All this due to the effects of Lewy Body Dementia....a disease that is slowly taking away the same abilities that once propelled him to work, give, and give some more, to support his family, and to give his community compassion.  Stories can be told of all the good he has done for us and everyone he has encountered, but my focus is to ensure that, aside from all the setbacks of LBD, we all remember that he is still here.  Most importantaly, he's still my DAD!!

    With a new family and a new job, time becomes an issue to travel to Thomaston.  However, with the great help of my miraculous mama, 2 great sisters, and 2 awesome brothers-in-law, I have peace of mind knowing that help is being offered to my father.  After coming home from work in Miami, Brittany (my wife), Madison (our one year old), and I traveled to Thomaston for a Sunday lunch and visit.  We made our way to Chili's.  While sitting at the table waiting for them to arrive, I look out the window and see "shuffle foot bobby" (offering my assistance in keeping a light heart in spite of the effects of LBD) running in the door.  Still the gentleman he always has been, he is rushing to open the door for his wife.  Showing a worn body and the effects of LBD, he plays with Madison and continually jumps out of his chair to play Madison's "pick up my toys I throw on the floor" game.  Then we retreat to the house for a priceless afternoon talk.  After countless attempts over the past year to visit with Dad, the tireless question of "Will he feel up to it today?" always seems to arise.  But as his only son, I have seen a fight in this champion when I mention the words, "We are coming for a visit."  Now, no matter how he feels, when we come to visit, he perks up.  Even if short-lived at times, these moments are what makes this a memory I am sure to never forget.

     The question that always seems to bug me is the fact that I will never know if Madison will get to know her Papa.  I can only hope she is so blessed, even if LBD may accompany.  As I think about the father I want to be, I cannot help but be taken back to my childhood dream, golf.  The countless hours we spent driving across the country and the concessions he made just to allow me to pursue a dream.  The dreams and values that were instilled in me are still present in his character today.  When problems arise, he is still there to offer his comforting voice.  The difference now is that advice may not be available that day.

      As this disease continues to try to interrupt our daily stride, we must stay steadfast in our faith and count the blessings we have been presented.  As our lives go on, I can only dream that I will continue to learn from my dad's unwaivering committment to never surrender.

A merry heart doeth good like a medicine...

As a pharmacist, my Dad knows the power of medicine.  As a Christian, he knows the power of this scripture.

A merry heart doeth good like a medicine, but a broken spirit dries up the bones.  Proverbs 17:22

I remember a calligraphy piece with this scripture (I *think* made by my Aunt Charlotte) hanging in the drug store for many years.  Never did I realize how true that verse would become in our lives.

We clung to it during my grandfather's battle with vascular dementia and my grandmother's battle with alzheimer's.  Now, we are clinging to it as their baby boy, my Dad, battles Lewy Body Dementia. 

Dad wanted to be sure I shared these things with you.  You see, he hasn't lost his sense of humor.  He laughs at his situation at times.  We all joke and laugh...it's one way to cope.  We can't control the situation, but we can control our attitudes.

LBD causes violent dreaming at times.  One night a few weeks ago, Dad was thrashing around and almost rolled out of bed.  Remember that the last time he pulled this stunt, he ended up with a glued together cheek, a broken nose, and 6 stitches above his eye.  We HAVE moved the nightstand since then, but we still don't want a repeat.  Anyway...the first two times he did this, Mom quickly grabbed his arm and held onto him.  The third time, she didn't make it.  He rolled out of bed, spun around on his feet, and proclaimed, "I hit a homerun that time!!"  It made them both laugh.  He wasn't referring to baseball, he was referring to his amazing feat!!  It sounded exactly like something my Pop (Dad's dad) would've said!!!

One day shortly thereafer, Dad realized he had forgotten to turn in some important paperwork related to the selling of Big C.  I said, "Just tell them you have dementia so you forgot."  We giggled at that, too! 

The other day, one of my first grade students prayed that God would make my Dad's "brain smarter."  It was so heartfelt and precious, but it made me and Dad chuckle.

I'm thankful I have a Dad who can laugh at the absurdity of LBD.  He can maintain a cheerful heart during trying times because he knows WHO holds his future securely. 

Now, the picture is not always rosy.  Dad isn't always laughing or joking.  The last few days his jerks and tremors have been much worse, and he has been physcially wiped out, hardly getting out of bed except to eat.  He  was holding a bottle of water the other day and he jerked involuntarily and dropped his bottle spilling it all over the floor.  He immediately burst out crying.  I'm glad he can face his sadness, too, and not just laugh it all off.

There are days our cheerful hearts are a good medicine,

 and there are days LBD is a tough pill to swallow.